Guest Column
| May 11, 2020

Why Patient-Generated Data Is Critical To HIEs

By Dr. Chris Hobson, Chief Medical Officer, Orion Health

A 360 Degree View Of The Patient

Health systems of all types have increasingly recognized the need to empower and engage patients in their care processes, ranging from disease prevention through to end-of-life care. To achieve that end, patient-generated health data (PGHD) is an important component. PGHD has had a place in the clinic for decades in the form of the patient symptom diary. Today, the symptom diary can be electronic, using apps on smartphones that can be reviewed at clinic and reduce clinician workload as patients capture the data themselves. Common applications include chronic pain management, glucose and diabetes apps, food diaries, EKG and heart rate monitors, and many more. Patients can take images of their rashes, and use devices including thermometers, glucometers, blood pressure cuffs, and oximetry. PGHD provides valuable information that may not be captured at each clinic visit.

As well as submitting data, patients can contribute their preferences for treatments and outcomes with the potential to significantly modify treatment plans in line with the patient’s wishes. This is especially valuable where there are significant trade-offs between benefits and risks and competing treatment options.

The ability to aggregate data from various sources and display in an easy to understand manner is essential for health information exchanges (HIEs). The more information, the better. We have already seen the benefit of incorporating claims data. The move to now includes social determinants of health such as income, employment, and housing will see an increasingly complete view of the patient and hopefully lead to improved patient outcomes.

Now, easy-to-use patient portals and mobile apps allow PGHD to contribute another important source of data to the HIE.

Provider Perspective:

PGHD represents an opportunity for patients to contribute to their clinical care and enhance clinical decision making, thereby improving the therapeutic partnership. There are challenges that come with the increased use of PGHD, including how to incorporate patient-generated data into the clinician’s workflow and how to avoid overwhelming clinicians with volumes of relatively low-value data. Ideally, patients should be able to contribute any data they see as helpful, while their clinicians should be able to specify elements, they are most interested in and access those quickly and easily. By setting appropriate incremental alerts so that providers are immediately alerted when critical data is uploaded, PGHD can improve value for clinicians.

Case Study: COVID-19 Home Surveillance At Terr-Esanté, Paris, France

With the outbreak of the COVID-19 virus came an urgent need to monitor the health of thousands of people in Paris, France, who had tested positive for COVID-19, and who were placed in home quarantine. Given the large numbers of people needing to be monitored, the health authority felt that an automated solution was a high priority. The chosen approach was to enable patients to enter structured symptom and device data on a twice-daily basis into their patient portal linked to the regional HIE. Public health clinicians responsible for that population were able to rapidly review color-coded alerts and dashboards reflecting the data. Within a few days, more than 3,000 patients were being monitored successfully.

Conclusions And Recommendations

The ability of patient portals and mobile apps – not only to view data but also to submit data – has opened the way for patient-generated health data to take its rightful place in the clinical and HIE-based patient record. This is an exciting time with renewed interest in the value of patient contributions to their care. It will always be important to clinicians that they have tools to manage the flow of data, to have critical elements highlighted, and to be able to filter or otherwise specify the types of data they are interested in. As well as clinical and device data, patients should be able to express their preferences for treatment and outcomes to contribute to their care plan.